close
  • Mega Menu Column
    • Facebook
    • Twitter
    • LinkedIn
    • Pinterest
    • Instagram
    • Donate
  • Home
  • Awareness Program
    • Program Overview
    • What Is PV/MMP?
    • Frequently Asked Questions
    • Educational Resources
    • Awareness Events
    • Patient Stories
  • Why Diagnose Early?
    • Diagnostic Pathway Data
    • Barriers To Early Diagnosis
    • Consequences of Delayed Diagnosis
  • Patients
    • Patient Resources
    • How To Talk To Your Dental Provider
    • Find or Recommend A Doctor
    • Patient Stories
  • Dental Professionals & Students
    • Your Role
    • What Is PV/MMP?
    • Diagnosis & Photos
    • Biopsy
    • Dental Management
    • Courses
    • Online Continuing Dental Education
    • Dental Students
    • Join Our Provider Directory
    • Educational Resources
  • Get Involved
    • Awareness Ambassadors
    • Awareness Events
    • Volunteer/Intern
  • Press
    • PemPress
    • P/P in the News
    • IPPF Quarterly
  • Contact Us
  • Home
  • IPPF
  • Contact Us
  • Sitemap
  •  Facebook
  •  Twitter
  •  LinkedIn
  •  Instagram
  • Donate
#5b6064#5b6064
  • Menu
  • Awareness Program
    • Program Overview
    • What Is PV/MMP?
    • Frequently Asked Questions
    • Educational Resources
    • Awareness Events
    • Patient Stories
  • Why Diagnose Early?
    • Diagnostic Pathway Data
    • Barriers To Early Diagnosis
    • Consequences of Delayed Diagnosis
  • Patients
    • Patient Resources
    • How To Talk To Your Dental Provider
    • Find or Recommend A Doctor
    • Patient Stories
  • Dental Professionals & Students
    • Your Role
    • What Is PV/MMP?
    • Diagnosis & Photos
    • Biopsy
    • Dental Management
    • Courses
    • Online Continuing Dental Education
    • Dental Students
    • Join Our Provider Directory
    • Educational Resources
  • Get Involved
    • Awareness Ambassadors
    • Awareness Events
    • Volunteer/Intern
  • Press
    • Press Releases
    • PemPress
    • P/P in the News
    • IPPF Quarterly

Diagnostic Pathway Data

In October 2011, KJT Group was commissioned by the IPPF to conduct an awareness and diagnostic pathways survey. Diagnosed pemphigus and pemphigoid (P/P) patients (N=87) completed a 15-minute online survey. Of patients surveyed, 25.3% were male and 74.7% were female. The average age of patients surveyed was 55 years, with 67.8% having pemphigus and 32.2% having pemphigoid. Roughly half (54%) of patients were diagnosed within the last 12 months and 46% were diagnosed within the last 12-36 months. All patients were from the United States.

  • Almost 80% of patients sought medical attention within the first three months of symptom onset.
  • The majority (63.2%) of patients’ initial symptoms were lesions in and/or on the mouth, lip, gums, or throat.
  • Dentists were one of the top clinicians seen first, with 23% of patients seeing a dentist as their first clinician. Almost half of patients (46%) saw a dentist at some point regarding their symptoms.
  • On average, patients saw five healthcare providers in pursuit of a correct diagnosis, and 10% reported seeing more than 10 healthcare providers.
  • On average, it took patients 10 months to achieve a correct diagnosis.
  • More than half of patients reported extreme difficulty in finding a doctor knowledgeable enough to accurately diagnose (56%) and effectively treat (51.2%) their condition.
  • Of patients who saw a dentist, almost half (46%) reported they were not knowledgeable about their P/P symptoms and performed no action relevant to their P/P. Forty-percent reported being referred to another healthcare provider, and 13% said they received a diagnosis.
  • The majority (83%) of patients reported having a negative experience when seeking a diagnosis.
  • More than half (60.1%) of patients felt the time it took them to be diagnosed was too long.
  • Almost all patients (96.6%) were unaware of P/P prior to their diagnosis.
  • When asked to indicate the one emotion that best described their experience from the time symptoms appeared to receiving an accurate diagnosis, 49.4% of patients said “frustrated”; 18.4% said “anxious”; and 11.5% said “confused.” Only 1.1% said “satisfied.”

Another study,* published in December 2000 by Dr. David Sirois, et al., surveyed 99 PV patients and found that 80% of patients experienced oral lesions as the first sign of PV, and 24% of patients only experienced oral lesions. Oral PV was less commonly recognized than cutaneous PV, with diagnostic delays commonly being greater than six months in duration.

*Sirois, D. et al., 2000. Archives of Dermatology. Vol 136. “Diagnostic Patterns and Delays in Pemphigus Vulgaris: Experience with 99 Patients.”

  • What is PV/MMP?
  • Diagnosis
  • Dental Management
  • Courses
  • Ambassadors
  • Resources
  • Donate
  • Home
  • Portfolio
  • Blog

About P/P Awareness

The International Pemphigus & Pemphigoid Foundation’s most important objectives are to provide patients and doctors worldwide with information about pemphigus and pemphigoid, and to provide patients and their caregivers much needed comfort and support so they can continue to live active, productive lives.

Quick Links

  • About The Awareness Campaign
  • Why Diagnose Early?
  • For Dental Professionals & Students
  • For Patients
  • Awareness Ambassadors
  • Press
  • Contact Us
  • Sitemap

Contact

International Pemphigus & Pemphigoid Foundation
1331 Garden Highway, Ste 100
Sacramento, CA 95833
United States of America

info@pemphigus.org
(855) 473-6744
(916) 922-1298

The IPPF Awareness Campaign is funded by the Sy Syms Foundation and the Unger family.

© 2015 IPPF Awareness Campaign | Sacramento Website Design and Implementation by Uptown Studios |Privacy Policy|Terms of Use

Our site uses cookies: Find out more.